Familial Ileostomy

[Jacob]

Hi. I do not have Chromes but I do have "Familial Ileostomy" (not sure I spelled that right). My understanding is though that in either case, removal of the colon (colonoscopy?) is a potential consequence. That being the case, and since I am now in the position of deciding if I want to live with the consequences of having either a ileostomy (attaching the Ilium to the abdomen wall) or the j-pouch procedure, I wanted to get some feedback from others that are living with the aftermaths of the surgeries. What quality of life can I expect. Is one procedure better to live with than another.

My appologies if I my terminology is not right. I am sitting in a hotel room and don’t have the info from the doctor in front of me to refer to. Cheers.

 

[Dallies]

Hiya Jacob and welcome. I can't answer your questions - but am sure there are many people here that can. xx

 

[Dexky]

Hey Jacob welcome!! I can't give any advice about either but if you do a search on both, I'm sure you will find many examples of others here who have experience with them. Good luck, I wish you well

 

[ameslouise]

Hi Jacob and welcome!

I have had a j-pouch for 8 years. It worked great for about 6 years, but unfortunately, was re-dx with Crohn's and now am having major problems.

If you do not have Crohn's, I would recommend the j-pouch for sure! My quality of life with it was fantastic. I lived normally and did everything and ate everything I wanted for the most part.

I had a temporary ileostomy bag for 1 year while I waited for the j-pouch construction and it was fine. There were some restrictions with clothing I could wear, but otherwise, I lived normally with the bag and enjoyed a very full life.

Good luck to you in making your decision! - Amy

 

[Jacob]

Thanks Louise. It is a big decision (I am sure you know). Gotta live with it for the rest of my life so it helps to know what I can expect either way.

 

[DustyKat]

Hi Jacob and :welcome:

I have no experience with surgery but perhaps if you browse the stoma forum you may find some answers about the surgery you require. I think, but I could be wrong, that there may be someone there that has had both types of surgery, you could start a new thread with your question in that section. The link is below.

http://www.crohnsforum.com/forumdisplay.php?f=46

I'm gad you found us and welcome aboard!

All the best,
Dusty

 

[Guest]

hi Jacob & welcome

i'm not sure what you mean by familial ileostomy? but i'm guessing you've been diagnosed with a genetic disorder affecting your ileum?

i've had a stoma since the age of 23, at first i was told it would be temporary, but it's turned out to be permanent... living with it has been mostly easy and ok, and my acceptance of it and the change in my body wasn't too difficult because, quite simply, i would not be here now if not for that operation.

we have a lot of members here with experience of stomas, and many threads on that topic - have a search around the forum, and let us know if there's anything you want to ask.